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Transition Experiences of Adolescent Survivors of Childhood Cancer: A Qualitative InvestigationLopez, Alana Delores 01 January 2011 (has links)
Adolescent survivors of childhood cancer are a growing population with unique needs as they face a combination of challenges associated with normal development and returning to life after treatment completion (Wakefield et al., 2010). One specific need identified in the research literature includes the effective delivery of transitional care and planning (Hewitt, Greenfield, & Stovall, 2005). It has been suggested that the provision of transition care and planning can help facilitate the shift from one phase of care to another and promote positive transition experiences (National Cancer Institute, 2008). The shift from off-treatment to post-treatment and school reintegration have been identified in the literature as significant transitions for adolescent survivors of childhood cancer (Cabat & Shafer, 2002; MacLean, Foley, Ruccione, & Sklar, 1996). However, limited research has been conducted to explore these transitions from the perspectives of adolescent survivors of childhood cancer.
An exploratory, qualitative study was conducted with eight adolescent survivors of childhood cancer between the ages of 14 and 17. A multiple case study research design was used to explore adolescent cancer survivors' perceptions of these transition processes, challenges associated with these transitions, and their beliefs about what supports/services were or would be beneficial during these transitions. Data collected for analysis included questionnaires, transcribed interviews and follow-up meetings, direct observation, documents, and parent feedback. These data were analyzed using a combination of a template organizing style, immersion/crystallization (I/C) approach, and multiple case study strategies (Borkan, 1999; Crabtree & Miller, 1999, Stake, 2005; Yin, 2008).
Results indicated that adolescents perceived that change was occurring on some level during the shift from off-treatment to post-treatment and school reintegration but did not necessarily define this time as a "transition." They defined these times in personalized terms that reflected more subtle changes in their lives. The focus was placed on returning to a sense of "normalcy" and capitalizing on opportunities to regain some control over one's life. The improvement and/or absence of treatment residuals along with re-engagement in activities and roles served as signs, or indicators, that life was returning back to "normal" and provided feedback to the adolescent on their transition progress. Conversely, the presence of these signs continued to impact their lives as they restricted participation in desired activities and served as reminders that the effects of cancer and treatment extended beyond treatment completion. In addition to the presence of treatment residuals, fear of relapse also was a concern associated with the transition from off to post-treatment. However, adolescents tended not to let this be the focus of their lives. School reintegration challenges included disruption of school life and routines as well as academic and social concerns. Academic challenges included falling behind/catching up with work, maintaining motivation to do work, and readjusting to school demands and routines. Social challenges included answering peer questions, adjusting to peer awkwardness/discomfort, and managing peer reactions to their physical side effects. These challenges were not perceived by adolescents as sources of significant distress and, often times, they adapted and employed coping strategies to address these concerns in the school setting.
Adolescents also varied in their perceived need for transitional care and support during these transitions. Support received during the shift from off-treatment to post-treatment included advice from health care team members as well as relationships with peer cancer survivors across school, community, hospital, and camp settings. They received a variety of academic and social support during school reintegration. Teachers, family members, and peers provided academic support across home, hospital, and school settings. Teachers were a particularly important source of academic assistance. Accommodations and modifications also were provided to these adolescents at school. Peers, teachers, and other school staff provided social support. Based on the findings of the study, suggestions for future research and practical implications are offered.
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Adaptive Styles and Coping Strategies of Youth Diagnosed with Cancer: Relationship to Well-Being, Psychosocial and Educational Adjustment, and Parents’ Adaptive StylesCorbett, Renee 31 October 2016 (has links)
Although almost 16,000 children and adolescents are diagnosed with cancer each year, the incident rates have remained stable over recent years, and mortality has decreased consistently since 1975 (American Cancer Society, 2016). With increased survivorship, research and practice in pediatric oncology has focused more on the psychosocial well-being of patients during and after treatment. With research repeatedly indicating that patients and families appear to exhibit great resilience and adjustment, and low incidences of psychosocial difficulties (e.g., Kazak, 1994, Eiser et al. 2000), some researchers have examined adaptive style as a possible construct that may help explain the predominantly positive outcomes (e.g., Phipps and Srivastava, 1997). The current study examined adaptive styles and coping strategies in youth diagnosed with cancer to determine relationships between these variables, as well as between each of these constructs and measures of subjective well-being, and psychosocial and educational adjustment. This study was also the first to examine relationships between youth and parent adaptive styles.
A total of 180 youth between 9 and 17 years old who have been diagnosed with cancer participated in this study. Each youth also had one parent who participated. Each youth participant completed a packet of self-report measures used to determine adaptive style group, coping strategy use, and subjective well-being scores. Each parent participant completed a questionnaire to provide sociodemographic information about the youth and parent, as well as information about their child’s illness and school experience. Parents also completed a packet of measures used to provide information about their child’s psychosocial adjustment and risk and to determine parent adaptive style. Data were analyzed to examine relationships between parent and youth adaptive style, group differences on measures of subjective well-being, psychosocial adjustment/risk, and academic variables, relationships between adaptive style and coping strategy use, and the predictive strength of adaptive style and coping strategies for the outcome variables.
Although the distribution of adaptive styles was similar among participants in the current study compared to those in previous studies of adaptive style for Repressive, Low Anxious, and Defensive High Anxious adaptive styles, there was a higher percentage of participants with High Anxious adaptive style in the current study. A statistically significant bidirectional relationship was found between youth and parents with a Repressive adaptive style. Results revealed significant differences between groups on measures of subjective well-being and internalizing behaviors, with Repressive adaptive displaying the highest subjective well-being and lowest internalizing behavior scores. Repressive and Low Anxious adaptive style differed significantly from the two High Anxious groups on the school scale scores, with the Repressive and Low Anxious groups having more positive outcomes on the measure. Relating to coping strategies, youth in the two High Anxious groups used more strategies all together, including both adaptive and non-adaptive strategies. However adaptive strategies were more frequently related to positive adaptive styles and outcomes, while non-adaptive strategies tended to have a stronger relationship to High Anxious adaptive style and negative outcomes. Limitations are discussed, and suggestions for future research and practical implications are offered, based on the results of the current study.
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